Susan Cole-Haley received her HIV diagnosis during routine immigration testing in January 1999, when her children were just five and seven years old. Told she had seven years to live by a poorly informed doctor, Susan has spent over two decades transforming from corporate sales executive to one of the UK's most influential HIV advocates.

Her journey encompasses raising four children, navigating healthcare discrimination, and fighting for health equity for marginalised communities. As co-founder of Phoenix Health Movement and former broadcaster of AIDS Map Live, Susan's work addresses the persistent inequalities affecting black women and other communities disproportionately impacted by HIV. Her story challenges assumptions about who gets HIV whilst demonstrating how advocacy can emerge from personal experience to create systemic change for others facing similar struggles.

Timestamped Takeaways

03:37 - The shocking diagnosis moment: "The doctor said to me, well, the good news is you don't have syphilis... But the bad news is you're HIV positive."

04:27 - Being told the wrong prognosis: "I said to the doctor, well, how long do you think you've got to live? And he said, oh, about seven years or so."

06:12 - Learning the truth through family support: "I realised that actually the doctor was wrong and that I could expect to have... a near normal life expectancy."

07:40 - Father's response highlighting stigma: "One of the first things he said to me was, make sure you don't tell anyone about this."

08:50 - GP's dismissive attitude: "My GP... said to me, oh no dear, that doesn't affect ladies like you."

13:37 - Cancer diagnosis complications: Finding breast cancer six months after being told it was just a cyst.

14:55 - Experiencing healthcare stigma: Oncologist asking "how I got HIV, how I wasn't passing it on to my HIV negative husband."

19:58 - 9/11 as turning point: "It made me feel like I wanted to do something more meaningful and impactful with my life."

22:56 - Naked magazine cover controversy: "I did a naked cover... to show that women living with HIV could have children born free of HIV."

24:46 - Healthcare inequalities: "Health inequalities affecting black women are nothing new. They've been affecting us for generations."

29:33 - Setting up Phoenix Health Movement: "We really felt that the care, particularly affecting black women just was not good enough."

32:44 - Interviewing Richard Gere whilst pregnant: "I said, oh, too busy for a pregnant woman living with HIV. And somehow that works."

36:33 - Global funding crisis: "It's estimated that over 6 million people will die in the next four years from HIV related causes because of funding cuts."

41:32 - Message to women needing help: "Please fight for your rights. You deserve optimal care."

Links:

• Other work from Producer Dan Hall.
• Positively UK - A peer-led organisation offering support and advice for people living with HIV, including women, youth, and migrants.
• The Love Tank - An organisation focusing on wellbeing of queer communities, especially Black and brown people, through projects like PrEPster and The Grass Is Always Grindr.
• Positive East - London-based support centre offering HIV testing, counselling, community outreach, and health services.
• PrEPster - Community-led PrEP (HIV prevention pill) education project. Offers clear and inclusive info for diverse audiences across the UK.
• National AIDS Trust - A UK policy and campaigning organisation dedicated to ending HIV stigma and promoting effective HIV policies.
• aidsmap - A trusted source for up-to-date, evidence-based information on HIV. Great for learning about treatment, living with HIV, and current research.
• Terrence Higgins Trust - The UK’s leading HIV and sexual health charity. Offers support, testing info, prevention resources (PrEP), and education materials.
• In the Key of Q - Podcast celebrating Queer musicians and their stories, also produced by Dan Hall.